The Patient Voice 2025
Inequities in Access to Diagnosis, Care and Clinical Trials in Lysosomal Diseases
Monday, February 3, 2025
15:00 – 16:00 PST
Overview:
The Patient Voice 2025 will be a 1-hour CE-session, held on Monday, Feb. 3, 2025 from 15:00 – 16:00 PST. This session is intended to discuss population inclusion and access to care and clinical trials regardless of diversity and socioeconomics, with a focus on improving patient care globally. The speakers included will strive to recognize individual perspectives and struggles for families despite backgrounds, socioeconomic, and racial barriers, and identify realistic ways to improve opportunities for all patients.
Course Director:
Jeanine R. Jarnes, PharmD, MSc, BCOP, BCPS
Assistant Professor, Department of Pediatrics
University of Minnesota
Minneapolis, Minnesota, USA
Chair:
Terri L. Klein, CNPM, MPA
President and CEO
National MPS Society
Durham, North Carolina, USA
Faculty:
Jeanita Pritchett Clay, PhD, PCC
Chief Scientific Diversity Officer
Office of the Director
National Center for Advancing Translational Sciences (NCATS)
National Institutes of Health (NIH)/Department of Health and Human Services (DHHS)
Rockville, Maryland, USA
(Additional speakers: To Be Announced)
At the conclusion of this session, the participants will be able to:
- Address the lack of incidence and prevalence data in non-white populations and the need for education regarding patient evaluation and appropriate testing, regardless of racial or ethnic background.
- Identify steps needed to break down barriers for patients who need to access specialty care, including telemedicine, local testing with communication of test results to specialty centers, financial assistance, etc.
- Define deficiencies in current clinical trial design, and changes necessary to eliminate barriers and maximize patient participation across geographies, ethnicities and socioeconomic strata.
WORLDSymposium is presenting the 2nd Annual Patient Voice to be held on Monday, February 3 at 15:00 PST, just prior to the 21st Annual WORLDSymposium Speed Mentoring and the opening event, “Be the Catalyst“. This session will be recorded and offered as part of the On Demand program through March 14, 2025.